Tales from my eventful and ongoing journey as a Generation X caregiver for my father and as an advocate for Lewy Body Dementia caregivers.

Thursday, February 17, 2011

Sick of It 2.

Dad had been seated in the exam chair for most of his appointment. The doctor decided he needed an EKG, so he brought in his little cart, grabbed his paper full of recording electrodes, and began sticking them all over Dad's chest. He connected the many leads, one to a sticker, then activated his machine to take a reading. As it turned out, he had to do two, so Dad had to sit there, wired up, for a little bit longer. I could see his hands picking at the stickers, not knowing what they were.

At this point, the doctor told us we were headed to the lab, so Dad's caregiver eased him out of the exam chair and manuvered him over to the waiting wheelchair. It seems that Dad had had enough, however, and he refused to bend his legs and sit down. The caregiver patiently tried over and over, trying to get Dad to grab the chair behind him and sit down, sometimes pushing him gently on the chest. Like a child who becomes completely rigid so he doesn't have to get into his high chair, Dad pulled his own brand of rigidity and rebellion, refusing to sit down. The caregiver and I looked at each other, shrugged, and decided to let Dad walk a ways. I grabbed the wheelchair, the caregiver grabbed Dad and away we went. Eventually, we stopped again, and Dad acquiesced to being in the chair, letting us wheel him away. I couldn't help but applaud him for his refusal to play along. He doesn't have the words anymore to express displeasure and refusal. People make him do things all the time. Using his body, the only means he has left, he made it very clear that he wasn't having it, and it was up to us to listen to his silent language.

2 comments:

My mother gets the same way when she is forced to do something that she doesn't want to do. Going to the doctor created more stress for her and everyone around her.

I found her a Geriatrician. It's an MD that specializes in Senior Healthcare. The one I found doesn't believe in poking and prodding seniors. There's really no point in trying to find something wrong with them in order to "heal" the problem; their prognosis isn't very good anyway with their current health state.

My mother still lives at home with us thanks to a Community Based program for seniors. Her doctor is the doctor for the nursing homes that I have her on wait lists.

I know it's hard to do but you can tell the doctors NO for your dad. I was doing this for my mom all the time and was constantly reprimanded by doctors. My mom didn't want all the tests, the poking and prodding so I was her voice.

It's so hard to see our parents in this state. I am sending you and your dad happy thoughts and lots of prayers.

Thank you so much for your kind words. A geriatrician sounds great! I was just thinking yesterday that someone needs to open a clinic with doctors who are familiar with people with dementia-it seems to throw regular doctors! My dad's religious beliefs preclude medical care so I'm trying to do as little as possible. Good luck with your mom and keep in touch!

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Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

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When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

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About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.